The Bullseye effect...

     So, I think all of our family and friends know that Kerstin is a huge Target fan!  No kidding!  The child LOVES Target!  You may have seen the pic I posted a few days ago of her looking at the store with dreamy eyes like "I love this place!"  I have been wondering what is it about the store!  The Bullseye?  The red letters?  The lights?  Store signage? The conversations that Kerstin eavesdrop on when we're walking aimlessly through the store?  What is it?  Whatever it is, she loves that place.

     This past Saturday, I decided to go in with her as an escape and a treat!  It was crowded, more crowded than on our weekday trips to the store yet, Kerstin was still very happy being in the crowd, in Target.  Shopping alone with a child in a wheelchair can be a task.  Try pulling a shopping cart while pushing the wheelchair, and add in a crowded store.  Sometimes the customers can be understanding and happily allow room, other times some can be assholes!  

     This crowded Saturday, the checkout lanes were busy and crowded, there were workers stocking items around the lanes.  One in particular stopped what she was doing, came over and spoke to Kerstin.  She asked her name, seeing that she was nonverbal, she looked to me to tell her Kerstin's name.  When I did, she proceeded to talk directly to Kerstin.  That made me smile!  A kind act like that meant so much.  It didn't end there, she took the shopping cart and put all of our items on the counter!  I thanked her, she assured me that it wasn't a problem.  

     Our encounter with this store associate didn't end after she placed our items on the counter, she went back over to Kerstin and told her that she would probably have to be reminded of her name a couple more times but, she would get and that she looked forward to seeing her next time!  This lady we met Saturday wasn't the only employee in this store location that remembered us on our visits.  We were once again, walking around one day when another associate seem to have come out of nowhere to speak and ask how we were that particular.  This lady told me that she sees us in there a lot and that Kerstin always looks happy.  Yeah, happy because it's one of her happy spots!  

     Target, if you happen to read this, she will happily model for your ads, LOL!  

Brag? Maybe

     I can proudly say that I am not one to brag...or at least I try my best not to brag.  When it comes to Kerstin and a milestone or achievement she has made, or something she's involved in, that all goes out the window!   It is with so much happiness that I can honestly and very proudly say that this post is nothing less than a brag post.  *insert a happy smile*

     So, I'm sitting with Kerstin, giving her a bolus and like always, I casually talk with her about what's on TV or the day we've had.  I notice that her little hands are growing, as is the rest of my little lady.  So, I take her hand and kiss it, telling that it's so soft and that is why my little one year old niece always kisses her hand.  I continued holding it as were bonding and I'm feeding her.  Suddenly there is a strong grip on my hand!! I looked at Kerstin and she's looking directly into my  eyes with a big smile on her face.  I said to her, "You're squeezing my hand!"   Without any hesitation, she squeezes it again!  Four times in a row and at my command of "Can you squeeze my hand again?"  She did so!!

My sweet girl is strong and a very determined little girl.  No matter how tired I may become, which happens every single day, no matter how often I feel like I want to give it all it...those times have hit me.  I know that if all that Kerstin has been through in her 13 years of life, I can and should be able to continue on!    And continue on is what I will do! 

She squeezed her momma's hand... 

     

Happy Thanksgiving!

Enjoy you family and friends!

Not all moms share the same secrets.

     I recently read an article from 2013, posted by a mom of a child with special needs.  The article was supposedly her list of secrets and titled "6 Secrets Special Needs Moms Know But Won't Tell You".  While I can't help but agree with some of the listed "secrets", some I cannot really relate to or just from a different perspective.  As parents, we all do things our own way and raising our families is one of those things. 

     Mom, Suzanne Perryman, in the article listed her 6 secrets and gave her reasons for them.  Her list went like this:  

1. Special needs moms are lonely
2. Special needs moms have to work extra hard to preserve their marriages
3. Special needs moms are not easily offended
4. Special needs moms worry about dying
5. Special needs moms are fluent in the transforming body language of touch
6. Special needs mom know how to savor the gift of a child saying "I love you"

I like Suzanne's list, and like I stated some I can relate to and some I cannot.  
     "Special needs moms are lonely", I can relate, at times it seems like no one fully understands what you are dealing with.  Taking care of a child who needs you for every single thing, doesn't give much room for other things or a very active social life.  The loneliness is especially harder since my job is with her at her school as her aid.  Sometimes even family tend to go their way socially and leave us in our own world.  Yet, they come back to "talk" about it all.  It may take us longer to get prepared to leave, once we do, it may take longer to load and unload but, we like being on the go.

     "Special needs moms have to work extra hard to preserve their marriages", okay!  I'm a single mother.  Kerstin was diagnosed and her dad walked away!  Yes, I have attempted to work hard to preserve relationships.  Even when love has been expressed to me and my daughter.  I guess when we can't always be on the go like others, it makes it a little bit easier to walk away and pretend we never happened.  That is one thing I cannot and will not continue to do, try to keep someone in our lives when they don't want to be here.

     "Special needs moms are not easily offended". I think that all depends on the emotions, the day and what's being said.  I am very easily offended by ignorance. Do I get offended when people ask questions about Kerstin, her diagnosis, her likes or dislikes?  Not at all.  What offends me are the stares.  The "what's wrong with her?"  Nothing is wrong with her, she's made the way she was intended to be made.  I like when I'm asked questions because you are genuinely concerned.  I think the more I can help someone understand, maybe the less stares she will get.  I am all about educating those we encounter, from the youngest to the oldest. 

     "Special needs moms worry about dying".  This is true.  I must admit that at times I have had very selfish thoughts about death.  I even wrote about Life Expectancy recently.  I often wonder what her life would be like if I passed away "now", before her.  I have even found myself praying that we go at the same time, that way I won't have to live and carry on without her and she wouldn't be without me.  Death is that one thing that is certain for all of us and we don't know when it will happen.  We just have to live each day and love like there is no tomorrow.  

     As far as special needs moms being fluent in touch and body language.  I know I have to be.  My daughter is non-verbal.  I have to notice her behaviors, her facial expressions and all.  She has a language all of her own. 

     "Special needs moms know how to savor the gift of a child saying "I Love You".  Again, Kerstin is non-verbal.  Her smile and those big beautiful tells me that she loves me.  When no one else is talking to me, my little love is a constant!  Feeling her arms around my neck is "I love you" enough for me.  Check out my Facebook update back in May.  It's moments like that, makes all of this worth it.  

     So, we all have secrets, we all have fears and we all deal with them differently!  One thing is for sure, we have to love our children, no matter the need or ability!

In all her tiredness, she enjoyed!

Suzanne Perryman, 2013.  6 Secrets Special Needs Moms Won't Tell You.

Wordless Wednesday- April 30, 2014

Weight is coming back up!!

So happy, that on yesterday my precious little one had gained a pound of her weight back!  Still not what I expected, but it is a step in the right direction.  She also had occupational therapy yesterday and did really well!  So happy for her, for us!!  We are going to relax again today and enjoy the blessing of a air conditioned home!!

More to come...